But is the diet helping??? I inadvertently edited out the answer to the question many of you were wondering when I wrote about the ketogenic diet for migraine last week. The answer is a resounding maybe. I have not achieved my primary goals—eating or drinking anything but water still triggers a migraine attack and I still eat only once a day. But small improvements are increasing my quality of life.

More responsive to migraine abortive meds: I still take Amerge and Midrin after every meal, but they are more effective than before starting the diet. I can usually function through the slowdown of early migraine symptoms that follow eating and sometimes barely feel the symptoms at all. One dose of Amerge and Midrin also manage some trigger foods that used to knock me out, but only if I eat them infrequently. I will soon experiment with taking Amerge sans Midrin after I eat.

Decreased pain levels: My migraine attack pain is a level 3 most of the time. It still reaches 4 occasionally, but not as frequently as before. I’ve had one 5 since starting the diet. Five years ago, this would have felt miraculous, but pain hasn’t been my worst migraine symptom since 2013. Before the diet, level 4 pain was the norm and 5 was a little more frequent, but not substantially.

Decreased fatigue: I am more functional during some migraine attacks. The improvement is minor. But I’ll take it given that the fatigue used to knock me flat. I also have less overall fatigue, which I’m guessing is because Amerge and Midrin are more effective.

Improved cognitive function. Again, this improvement is minor but noticeable. A migraine attack no longer means I can’t write or read somewhat complex information. I can only write rough drafts and can’t translate journal articles. I can, however, get the gist of journal articles and have no problem with information for the general public, like press releases.

Are you wondering why I’m staying on a diet that is causing me to lose too much weight and become malnourished, but is only kinda working? It’s because I’m not fully settled into the diet yet. Here’s why I’m sticking with it a little longer.

Three months for a full metabolic shift

The metabolism fully shifts from burning carbs to burning fat after three months of ketosis, according to my dietitian. Cellular and mitochondrial changes that happen at three months could impact my migraine attacks (for better or worse). April 15 is my three-month mark. I started the diet January 3, but wasn’t consistently in ketosis until the 15th.

Diet side effects

I’ve had a variety of issues implementing the diet and won’t be confident I’ve given it a good try until I’ve resolved them. The major nausea six hours I’ve gotten after eating every day for more than four weeks has been a huge burden. After working with two dietitians and my naturopath and trying numerous remedies, I think the issue is dehydration. Drinking 96 ounces of water a day is not enough; it looks like I need 128 ounces to stay hydrated on this diet.

Then there’s malnutrition. My blood work keeps coming back with levels that are way off in different areas. In January, my liver enzymes were alarmingly high. They looked good in February. Now they are high again, but not as high as in January. That’s just one example, but any of these extreme fluctuations within my body could be triggering migraine attacks. Many of these things can be supplemented, but that’s another problem, which I’ll explain in the supplements section below.

Drug and supplement side effects

Zofran: The nausea has me taking 8 mg to 16 mg of Zofran a day. Normally I take 4 mg or 8 mg sporadically. It’s unlikely, but that increase could be increasing my migraine attack frequency.

Adderall: When I tried increasing from 10 mg of Adderall to 20 mg in February, I became even more reactive to food. My migraine attacks lessened in severity and became more responsive to meds when I went back down to 10 mg. Last Monday, I stopped taking Adderall altogether. For the first few days, I thought my food reactivity decreased, but then it seemed to increase. After a few rough days, I resumed taking 10 mg yesterday. I’m still not sure what the ultimate verdict on Adderall will be, but I need to make it before I determine if I’ll stay on the diet or not.

Supplements: Starting supplements to counteract malnutrition is likely an ever bigger factor than either Zofran or Adderall. Most supplements I try, even in very small doses, trigger migraine attacks that are unresponsive to medication. Another problem is that the preferred supplement to manage elevated homocysteine (my current blood work red flag) is 5-MTHF. That’s the supplement that triggered pretty severe depression the last time I took it to manage elevated homocysteine caused by malnutrition.

Managing wildfires

Managing a ketogenic diet for migraine feels like trying to contain a series of wildfires. As soon as I think one fire is under control, another part of the forest goes up in flames. Or the wind shifts and the fire I thought was contained flares up again. In a few weeks I’ll have to decide whether to keep fighting the fire or just walk away. So far, the improvements aren’t substantial enough to risk further malnutrition. But I keep hoping that after some of the fires are under control, I will feel better enough that the improvements are worth the risk.

At Christmas-time, Hart and I made plans to see friends from Montana who were visiting family in a Phoenix suburb. I offered to make the 30-minute drive to where they were staying so their kids could sleep while we talked. They got a babysitter and came to our house instead. I thanked them, saying that since I didn’t have to go anywhere, I was able to take a shower. They laughed, assuming I was joking. These are close friends who know I’m quite ill and their laughter showed me that no one other than Hart really knows the affect migraine has on my day-to-day life.

This has been a typical bad week. The migraines haven’t been horrendously painful, but the conglomeration of symptoms, particularly fatigue and nausea, has really drug me down. (I should interject to say that by “not horrendously painful” I mean that the pain hasn’t exceeded a level 7 on a scale of 1 to 10 — I forget that my perception of pain is skewed.) It was the perfect opportunity to catalog my activities to show what my days are like. I’m now trying to figure out how to share them with you in a way that isn’t tragically boring.

Tuesday
I stayed in bed reading news on my phone for two hours after I awoke. I usually feel worse after I get out of bed, so I like to linger if I feel OK so I can savor it. I used to plan my days while still in bed, but I stopped after noticing that the plans usually collapse because I usually feel so much worse within 15 minutes of getting up.I felt well enough when I got up to shower, which has been unusual the last eight weeks.

Showering often depletes my energy and Tuesday was no exception. It took two hours of playing Words With Friends and mucking about on my phone to gather enough strength to go out for a few groceries.

When I got home, I was grumpy, weak and very spacy, all indications of an impending migraine. I took a Maxalt melt and a Zofran and watched an episode of Dr. Who while the drugs went to work. Afterward, I was able to clean up some veggies and roast them for roasted vegetable stock. That was it for my energy, though, and I was in bed by 9 p.m.

Wednesday
I had an 11 a.m. appointment, so I set the alarm for 9:30, knowing how slow mornings can be. It took an hour for me to get up, dress (in the previous day’s clothes) and put in my contacts, during which time I had Hart cancel my appointment because the migraine was too bad. I had to sit down several times while getting dressed, then crawled to the door so I could grip the frame to pull myself up. I walked the 10 steps to the bathroom and sat on the floor to rest before putting in my contacts.

I spent most of the day watching Dr. Who, though I got up and walked around after every episode to see if I felt well enough to do something. By 5:30 p.m. I was able to pile the roasted veggies in a pot and fill it with water to make the stock, but I was trembling so violently that I had to lean on the counter to hold myself up. Severe trembling is another sign that I’m in the early stages of a migraine, so I took an Amerge, pushed through what I needed to do in the kitchen and watched another Dr. Who. It halted the migraine pain, but I never did regain enough energy to do anything else.

Also, I was too cognitively impaired all day to be able to play Words With Friends, which has become a source of pleasure and connection for me.

Thursday
I felt good enough that I thought I’d be able to take a shower and not have to wait for a recovery period. Nope, the shower wore me out and another migraine hit. More Dr. Who while I waited for the Maxalt and Zofran to work. They did, though not in time for me to make it to my dental appointment.

I napped and by 3 p.m. was in good enough shape to drive myself to Whole Foods. Not only that, I started chicken stock on the stove while I sent some emails that I’d been too sick to deal with, and heated up dinner to eat with Hart. We ate, then I cooked some more and cleaned the kitchen. And, for the last hour, I’ve been writing this post. This qualifies as a good day.

I noticed when I got into bed that my entire head, including the roof of my mouth, was pounding. Four hours and two Midrin later, I was finally able to go to sleep.

I am not a lazy person. Chronic migraine is not an excuse for me to be a couch potato. I am forever asking my body to allow me do more than it wants to do and take advantage of nearly every decent moment I get. Knowing how little I accomplish even though I try so hard is disheartening. Acknowledging how long it takes to get out of bed or the devastation a shower unsettles me.

Simultaneously, I am proud that I make the most of my limited life. The smallest achievements are exciting and I enjoy every task, even cleaning the toilet, because I’m thrilled to be able to do them. I never know how long a good spell will last, so I don’t take any of it for granted. Carpe diem is my motto because it has to be. If I didn’t seize the day, I’d likely wither away.

A friend recently told me that my day-to-day life seems pretty awful. Compared with a normal life — and with the grand, world-changing life I expected to live — it is. But these are the circumstance that I have to work with and I’m growing accustomed to the limitations. I get angry and frustrated at times, but I also revel in the joy of a perfectly crafted chicken broth, indulge in the wonderful fiction of audiobooks and television series, and appreciate when I’m able to write something that helps others with chronic daily headache or migraine. Considering how small my life appears on the outside, I feel like I live pretty large.

Welcome to Kerrie Smyres' writings about chronic migraine, headache disorders, chronic illness & depression. Here you'll find coping strategies, resources, news & more to help you live a fabulous life with chronic illness.